1st meeting with Oncologist

1 minute read time.

And so my Mum's journey to kick Cancer's butt has started..."officially"...

Her Oncologist is lovely, as is his Registrar...they were kind, and explained everything clearly and honestly. Mum (like me) copes better with things when she knows what she's dealing with...knowledge is key (for her anyway...I know for some, it doesn't work like that). She said she wants to know, "warts and all"...

Firstly, they wish to do a repeat CT scan just to see how things are since her last ones. The previous ones were done on 28th July and 17th Aug 2012 respectively.

Secondly, they are gonna really throw everything at her...she's a fighter so its only what she deserves. Five rounds of Radiotherapy treatment (10min per session) over five consecutive days, to start in about 2 weeks time. This is purely for pain relief for the pain she experiences in her sacrum (where the cancer has spread from her liver). This should give her months of pain relief...she may even be able to come off morphine completely...this would be wonderful!

Thirdly, they are going to start her on Nexavar - they've just sent off the application for funding and said it should take about 3 weeks before treatment can start. In the meantime, all the above will happen. Having done my research and had advice from a friend of mine who used to be an Oncologist, this is definitely the best treatment to 'buy her time'...

Prognosis: the "average" for Metastatic HCC is 10.7 months (with treatment) with half surviving less, and half surviving more. Am putting Mum in the latter as she is only 64, is otherwise in good health, despite cirrohsis of the liver, her liver function is good and it has (so far) only spread to a small part of her sacrum. 

So there we have it...second 'Pain Clinic' on Wednesday to review liquid morphine - hoping they will move her onto something a little more 'sociable' as we are both knackered having to administer the 4-hourly doses at midnight and 4am! But whatever we need to do to keep the pain at bay.

Notice not a hint of emotion in this blog...I think shock has been replaced with 'practical mode'...although, that didn't stop me from losing it last night into my pillow...nor my completely inability that my Mum may not be with us this time next year. She is my absolute world...

Anonymous
  • FormerMember
    FormerMember

    Hope you don't mind me replying. I am new to the site and my Mum is now officially on the roller coaster, after seeing Oncologist for 1st time yesterday. We are in Cheltenham hospital and they are wonderful. My Mums prognosis is 6-9months with treatment, but she is determined to fight for as long as she can.

    I gain my strength when I am with her, and to be honest the tears are getting less when I am not with her. It is the fear of the unknown - that sometimes gets the better of me. We have spent some wonderful quality time together over the past few weeks - even if it's not that exciting the fact that I can hold her hand and laugh with her, makes up for it.

    I have a son who is 11 this week and how hard it must have been for my Mum to buy him a card - for what will be the last time!! She is on for the party and as my son is not aware of His Nan's illness, It will break my heart to know it will be the last we share!!

    But I have to be thankful that at least she will be there.

  • FormerMember
    FormerMember
    Thanks for your message - I'm sorry you and your Mum are also on this roller coaster :( I think the way you and your Mum are approaching things is very healthy and it is just what we are doing. My partner and I only live 10 miles away but temporarily have moved in with my folks 5 weeks ago when my Mum's pain got really bad and it's taken that long to get it semi under control and for her to go through the process of starting Radiotherapy and (hopefully) starting chemo next week...we will stay as long as we need to as at the moment, Mum needs to take liquid morphine every 4hrs, so I get up at midnight and 4am to make sure she gets it. We've been through some rocky times in the last few weeks...mainly because we are getting our heads around the devastating news and trying to manage her pain (which I think, at last, we are finally getting on top of, although the radiotherapy will make things worse before they get better and then we've got side effects of chemo to tackle after that!!) Mum's general well being and attitude are improving every day - she gets herself up, washed and dressed, is eating relatively well considering, she's trying to walk (albeit slowly) for at least an hour outside which is all very positive. I think in these trying times, it's important to spend quality time with each other and do whatever you need to keep each other going...one thing I am learning (slowly) is you've also got to look after yourself if you start doing a lot of caring...because it can sap your energy and your sanity at times, so time out is important. I wish you, your alum and your family the best of luck on this journey we find ourselves forced on...it's nice to know there is some mutual support on forums like this.